European cancer patients need to be heard

WHEN the European Parliament voted in October against the Commission proposal for a pilot scheme to allow the pharmaceutical industry to provide Direct To Consumer information (DTC), you might have been forgiven for thinking that patients would protest about attempts to stifle their right to know more about the medication they were taking.

Although cancer and cardiovascular disease are the two biggest killers in the EU, they were not included in the diseases areas selected for the pilot scheme, so this could be a reason why cancer patients did not immediately make their voices heard.

A more likely reason, though, is that the structures that would allow them to do so at European level do not exist.

Although there are hundreds if not thousands of national cancer patient groups in member states, currently Europa Donna, the Milan-based breast cancer organisation, is the only one to operate at European level.

The group acts as secretariat to the European Parliamentary Group on Breast Cancer, and its members were among the first to join the European Health Forum set up by Commissioner David Byrne to enable patients to become more involved in policy development, and to provide a means of consulting with a wide range of interests on health issues.

The group is keeping breast cancer issues on the European health agenda. There are plenty of similar opportunities for other cancer groups to do the same for their diseases, but these are not being taken up.

For example, in a study to be published shortly, cancer patient groups across Europe were asked about their attitudes to the provision of information about their treatments. Although they were far more cautious than people with other diseases about the idea that pharmaceutical companies should supply them with information, they supported the idea that greater information about treatments was needed.

The primary reason for this was that many of them felt that the people they represented were not told the whole truth about the medicines they were taking, and in particular, the often unpleasant side effects of cancer drug therapy.

Could this be simply because European cancer patients are not organised enough to make their wishes felt?

A comparison with another patient grouping is enlightening in this case: the side effects of treatment for HIV/AIDS are also very unpleasant, yet no one suggests that HIV patients are under-informed on this issue – and that may well be due to their strong European representation.

Indeed, the EMEA (European Agency for the Evaluation of Medicinal Products) exceptional circumstances procedure was used to licence eight anti-HIV/AIDS drugs during the period 1995-99 – as opposed to only two for cancer. The HIV community was active in pushing for all these approvals.

With five-year survival on the increase, it is possible that more cancer patients will find the energy and enthusiasm to pursue their cause at a European level.

That is crucial, since European legislation is impacting more and more on the provision of national cancer services. For example: compassionate use, oncology drug approval, speedy access to cancer treatments, the Clinical Trials directive, and mobility of patients.

Cancer patients must start contributing to policy discussions at an early stage, when policy can be shaped, rather than waiting until legislation is in place and unlikely to change.

MEPs say they take far more notice of a health issue if approached by patients as well as industry.

However, they also claim there are some ‘patient groups’ that are simply a front for a pharmaceutical company interest, and certainly there are a few of such description.

But provided there are strict guidelines about conflicts of interest and transparency about funding sources, independence can be easily maintained.

European patients in other disease areas have shown what can be done in raising the profile of their condition and having an effect on public policy – as well as on influencing their doctors, treatment, and the perception of the public about their condition. Cancer survivors should be out there on the European stage using their experiences to insist on better screening, diagnostic and treatment facilities, as well as supporting continued research to find a cure for the disease.

Mary Rice is an expert in health communications and public affairs, and formerly head of public communication at the UK Medical Research Council.